Saturday, September 22, 2012

The doctors still don't get us

Lia Lee in 1988

The article
below is an obituary about Lia Lee, who lived most of her 30 years of
life in a persistent vegetative state. Some of it is not relevant to us and our
children. But certain aspects of her and her devoted parents’ lives resonated
with me. For instance the
distance and coldness of many of the doctors who treated her. The
article blames that on the culture gap between them and Lia’s family, Hmong
immigrants.Then there was
the astonishment of American society by the Lees' caring for Lia at home.
The article attributes that devotion to their unique Hmong culture.And, finally,
there was Lia's illness, epilepsy. In addition to my C.'s other
neurological ailments and her blindness, she has suffered from debilitating
epilepsy for sixteen years.True, our children are fortunately not in the state that Lia was. But many are
just barely across that divide between the "Lias" and the profoundly
disabled. Some of our
children’s doctors can’t even distinguish between the two categories. When C. was
about a year and a half old we were still fighting for additional para-medical
therapies from our health fund. In
response, the fund sent us to its chief pediatric neurologist for an
assessment. He concluded that C. would not benefit from more therapies because,
as he put it, she was "in a coma."Many of us
endure a cold medical establishment even though, unlike the Lees, we share its
culture and language. And many of us keep our children at home despite our own culture’s
disparagement of that choice. I have stopped counting the times that doctors,
friends and relatives have asked me “Do you still have C. at home?” or “Why
don’t you put her in an institution?”

P.S. As a mother who lost another (healthy) child, aged fifteen, I related to the
unfathomable losses of their children that the Lee family suffered alongside
Lia's illness.

Life Went On Around Her, Redefining Care by Bridging a Divide By MARGALIT FOX [ Published in the New York Times September 14, 2012 ]In 1988, when Anne Fadiman met Lia Lee, then 5, for the first time, she wrote down her impressions in four spare lines that now read like found poetry: barefoot mother gently rocking silent child diaper, sweater, strings around wrist like a baby, but she’s so big mother kisses and strokes her The story of Lia, the severely brain-damaged daughter of Hmong refugees who had resettled in California, became the subject of Ms. Fadiman’s first book, “The Spirit Catches You and You Fall Down,” published in 1997. Its title is the English translation of the condition known as qaug dab peg (pronounced “kow da pay”), the Hmong term for epilepsy, from which Lia had suffered since infancy. In traditional Hmong belief, qaug dab peg, like many illnesses, is spiritual in origin, caused when the soul becomes separated from the body. A traditional cure might entail visits from a shaman, who would attempt to reunite body and soul. A work of narrative nonfiction, Ms. Fadiman’s book is a cautionary tale about the cultural chasm between Lia’s family, with its generations-old animist beliefs, and her rationalist American doctors. “In some sense, I was trying to provide a way of controlling her seizures with Western methods and Western medicines,” said Dr. Neil Ernst, who with his wife, Dr. Peggy Philp, was one of the pediatricians who treated Lia early on. “And in some sense, the Lees were giving up control of their child to a system that they didn’t understand.” That cultural divide — despite the best intentions of both sides, Ms. Fadiman wrote — may have brought about Lia’s condition, a consequence of a catastrophic seizure when she was 4. Over the years, whenever Ms. Fadiman lectured about the book, readers would press a single question on her before any other: “Is Lia still alive?”

NY Times image and caption: Most of Lia Lee's life was a testament to familial devotion, and she lived much longer than most do in a vegetative state.

Lia Lee died in Sacramento on Aug. 31. (Her death was not widely reported outside California.) The immediate cause was pneumonia, Ms. Fadiman said. But Lia’s underlying medical issues were more complex still, for she had lived the last 26 of her 30 years in a persistent vegetative state. Today, most people in that condition die within three to five years. Acclaimed by reviewers, “The Spirit Catches You and You Fall Down” won a National Book Critics Circle Award. It has sold almost 900,000 copies, according to its publisher, Farrar, Straus & Giroux, and remains widely assigned in medical schools and in university classes in social work, anthropology, journalism and other fields. As a result, Lia’s story, as few other narratives have done, has had a significant effect on the ways in which American medicine is practiced across cultures, and on the training of doctors. “A lot of people in medicine were talking about that book for a very long time after it was published,” Sherwin B. Nuland, the physician and National Book Award-winning author, said on Wednesday. He added: “There’s a big difference between what we call ‘disease’ and what we call ‘illness.’ A disease is a pathological entity; an illness is the effect of the disease on the patient’s entire way of life. And suddenly you read a book like this and you say to yourself, ‘Oh, my God; what have I been doing?’ ” A labor of eight years, “The Spirit Catches You and You Fall Down” is also the story of the immense benefits of tradition, which can furnish, Ms. Fadiman makes clear, a level of familial devotion less often seen among modern Americans. Lia spent her entire life at home, assiduously cared for by her family, and it was this devotion, Ms. Fadiman came to feel, that kept her alive for so long. “She was never shunted to the periphery,” Ms. Fadiman, the daughter of the author and television personality Clifton Fadiman and the journalist Annalee Jacoby Fadiman, said on Wednesday. “I remember her most in her mother’s arms. Family life went on around her and in some ways revolved around her.” The 14th of 15 children born to her mother, Foua Yang, and her father, Nao Kao Lee, Lia Lee was born on July 19, 1982, in Merced, Calif. — the first of her parents’ children born in the United States, and the first born in a hospital. She was plump, porcelain-skinned, lively and beautiful. The Lees had arrived in the United States two years earlier with their seven living children, a blanket, a mortar and pestle and little else. They had been farmers in their native Laos; three of their children died there when they were very young. During the Vietnam War, many Hmong were recruited by the United States to fight the North Vietnamese in Laos; after Laos fell to the Communists in 1975, 150,000 Hmong, in fear of their lives, fled the country. The Lees were among them. It took the family until 1980 to reach the United States. Along the way they endured a perilous odyssey that included an attempt to flee their village before being forced back at gunpoint by Vietnamese soldiers, and a later attempt, culminating in a 26-day walk to Thailand, where they spent a year in refugee camps. During these five years, three more of their children died. In the United States, the Lees eventually settled in a modest apartment in Merced, about 120 miles southeast of San Francisco. By the time Ms. Fadiman met them, Merced’s population was one-sixth Hmong. Lia had her first seizure when she was about 3 months old. At Merced Community Medical Center, a resident misdiagnosed her condition. Communication was impossible: the Lees spoke no English, and the hospital had no Hmong interpreter. “My parents weren’t able to convey exactly that she was having seizures,” Lia’s sister Mai, now 32, said in an interview on Wednesday. “The word ‘seizure’ didn’t come out. To them, they saw it as her soul being tampered with by something of a different realm.” Lia’s seizures continued; epilepsy was eventually diagnosed and anti-seizure medication prescribed. But to her parents, qaug dab peg was literally a mixed blessing: on the one hand, Lia’s soul had been taken from her and she needed it back; on the other, her condition portended spiritual giftedness, something many traditional cultures ascribe to epilepsy. Perhaps, the Lees believed, Lia was destined to become a shaman herself. The Lees did not always give Lia her medication, Ms. Fadiman wrote, because they did not want to interfere with qaug dab peg entirely. To encourage her soul’s return, her parents gave her herbs and amulets. She was sometimes visited by a Hmong shaman, who performed a ritual that included chanting, beating a gong and sacrificing a chicken or pig. (The strings around Lia’s wrist noted by Ms. Fadiman are used in Hmong tradition to help protect people from malevolent spirits.) All this baffled Lia’s doctors. “I felt that I was trying to penetrate a very dense wall — a cultural wall — and didn’t have the tools to do it,” Dr. Ernst said. The seizures worsened; by the time Lia was 4 ½, she had made more than 100 outpatient visits to medical facilities and been admitted to the hospital 17 times. When she was not quite 3, in frustration at what he viewed as her parents’ refusal to administer her medication, Dr. Ernst had Lia legally removed from the family home. She spent a year in foster care — a time, Ms. Fadiman reported, of great trauma for Lia and great bitterness for her family — before being returned to her parents. (In recent years, Dr. Ernst and Mai Lee said, there has been a rapprochement between Lia’s family and her doctors.) In 1986, when Lia was 4, she suffered a grand mal seizure that lasted nearly two hours before doctors were able to bring it under control. At some point, amid the many procedures her condition required that day, an infection set in. She went into septic shock, and her organs began to fail. By the time she was stabilized, Lia had lost higher brain function. Her doctors expected her to die. She did not die. She could breathe and whimper but could not speak; she was capable of little voluntary movement but could still feel pain. It was unclear how much she could see or hear. Lia no longer had seizures, because she now had vastly reduced electrical activity in her cerebral cortex, the brain’s outermost layer. She grew only slightly, as is typical of children with severe brain damage: by the age of 30, she was 4 feet 7 inches and weighed 47 pounds. For 26 years, her days varied little: her parents bathed her, fed her, flexed her stiffened limbs, kissed, caressed and tenderly talked to her. There were visits to doctors in Merced and later in Sacramento, where the family moved in 1996. There were periodic visits from a shaman, intended not so much to cure Lia as to ease her suffering. “Everything that my parents had done for her is all manual labor,” Mai Lee said on Wednesday. “Carrying her from place to place, transporting her to appointments here and there, it was all done manually. They did that for a very long time.” Nao Kao Lee, Lia’s father, died in 2003. Besides her mother, Foua Yang, and her sister Mai, her survivors include a brother, Cheng, and six other sisters, Chong, Zoua, May, Yer, True and Pang. In Merced and far beyond, Lia’s legacy is pervasive. In 1996, largely in response to her case, Healthy House, a social-service agency that facilitates medical care for Merced County’s non-English-speaking residents, was founded in Merced, the county seat. Among its services is an interpreter training program, which provides medical interpreters in a half-dozen languages, including Hmong. At Mercy Medical Center Merced, the current incarnation of Merced Community Medical Center, Hmong shamans are now allowed to visit patients and practice a limited number of their traditional arts. (Animal sacrifice is excluded.) “The Spirit Catches You and You Fall Down,” continuously in print and released this year in an updated edition, has extended Lia’s reach to a new generation of doctors. At the Yale School of Medicine, for instance, the incoming class is required to read it — a tradition that was begun a dozen years ago, well before Ms. Fadiman herself began teaching at Yale, where she is the Francis writer in residence. And as hospital wards across the country become ever more diverse, seasoned doctors, too, have found there is much to be learned from Lia’s story. Among them is Dr. Nuland, the son of Jewish immigrants from Eastern Europe, who received his medical training in New Haven in the 1950s. “Most wards were filled with Italians, Irish and Jews,” he said, recalling those years. “We had an occasional Gypsy, an occasional Chinese person and some Hispanics, and we would walk among them with our lordly presence. You’d learn a couple of words of Italian, a couple of words of whatever, and you’d use them with patients and think you were being very clever.” He added: “In our day, the whole thing was to assimilate, to look and act like a WASP. We could have provided so much comfort to patients who looked like our parents. And we just didn’t.”

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About my blog

C. is the youngest of our children. She suffers from severe epilepsy, blindness, microcephaly and profound cognitive and physical impairment.

We have faced hurdles and gained insights through our encounters with the medical, educational and governmental establishments.

Nobody was there to help or guide us.

I would love to spare parents in the same predicament some of the painful mistakes and wasted efforts we have made.

I am also eager to promote greater acceptance, inclusion and appreciation of our children. The new, heightened awareness of people with disabilities tends to gloss over our children - the ones with profound disabilities. They are a forgotten minority within this minority. Still marginalized and even shunned by many "enlightened" societies, they are a long way off from achieving equal rights.